redrawing the map

Editor’s note: Many of my autistic friends, especially women, were diagnosed as adults. There are myriad reasons for that, but they belong to another post. Nearly all of them were diagnosed with a patchwork of other conditions throughout childhood and into adulthood, none of which ever felt – or was – right. When the autism diagnosis came, it was, for many of them, revelatory. It was not, however, always so for their parents. This is for them.

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Oh, my Mama friend, I know.

Even though our experiences were different, I still know.

I know it’s hard to be hit with news that throws your world into a confusing, unsettling imbalance.

I know that it makes no sense at first, even while making all the sense in the world. I know that it’s far, far easier to imagine that life is still as you always thought it was than to start peeling back the layers of what it really was – what it is.

I know how hard it is to face the fact that the child you assumed was just like you, who you parented as though they were just like you, wasn’t — isn’t.

I know how much easier it is to deny the differences than to acknowledge the guilt of not seeing them.

Brooke must have been three years old. She wanted her ballet slippers. I don’t know why, perhaps she was playing dress up, perhaps the moon was in the seventh house. Whatever the reason, she had it in her little head that she needed her ballet slippers.

I looked around the house but I couldn’t find them. I didn’t think it was a big deal. I flippantly told her that the slippers were a no go. I knew so little. She began to perseverate on one sentence. “I want my ballet slippers!” Over and over and over and over again. “I want my ballet slippers!” It would almost have been funny. But it wasn’t. It got louder. She got more anxious. “I want my ballet slippers!”

I explained that I couldn’t find the slippers. I’m sure I offered an alternative. She fell apart. Sobbing, shaking, yelling – you know the rest. All the while, stuck in automatic rewind. “I want my ballet slippers! I want my ballet slippers!”

I wasn’t going to stand for a tantrum. Oh hell no, not this mom. I don’t ‘do’ tantrums. Not in this house, child. I sent her to her room. I just didn’t know. I had to walk her up there because she didn’t understand what I was saying. Or she couldn’t hear me. Or both.

All the way up the stairs she yelled, “I want my ballet slippers!” Jagged sob after jagged sob. “I want my ballet slippers!” Her little body shook like a leaf in a hurricane.

My dad’s words rattled around in the back of my head “You’re really quite lenient with those kids.” Oh yeah? Watch this, Pop. She will NOT get away with this kind of behavior.

“I want my ballet slippers!” She could barely catch her breath, but there was no stopping the broken record. “I want my ballet slippers!”

For heaven’s sake, enough with the %$&*!@ ballet slippers! I put her in her room. I didn’t know. God, I just didn’t know. “I want my ballet slippers!” Gasp. Sob. “I want my ballet slippers!” Over the screams, above the hoarse cry, I explained that she would stay in that room until she could calm herself down. Calm herself down. I didn’t know.

I walked away. She looked so small standing in the middle of her room. I choked back my own tears. I swallowed the sour taste in my mouth. I left her there screaming, overwhelmed, confused, lost.

“I want my ballet slippers!” Gasp. Sob. ”I want my ballet slippers!”

I crouched against the wall at the bottom of the steps struggling to find the right thing to do. I can still feel that wall – cool, immovable against my back. I could barely breathe. Something wasn’t right, but I didn’t know what.

I thought of Ferber’s sleep method – let your child know they are safe and loved but leave them to soothe themselves. I went up again. I stood in her doorway and I told her that she would be free to come out of her room when she got it together. I raised my voice in an attempt to be heard over her screams. “I want my ballet slippers! I want my ballet slippers!” I told her I loved her. Then I told her that her behavior was unacceptable. I walked away again and left her screaming, her face streaked with mucus and tears.

I went up again. I grabbed her by the shoulders, too hard. I squared her body to mine and chased her eyes. “Enough with the God damned ballet slippers!” God, I didn’t know. I am so sorry. I thought she WOULDN’T stop. I didn’t know she COULDN’T stop. I didn’t know there was a difference. I just didn’t know.

She didn’t see me. She didn’t hear me. I am so sorry.

I thought she wouldn’t stop.

I didn’t know she couldn’t stop.

I didn’t know there was a difference.

Finding out, even years after the fact, that there is a difference changes everything. And that’s hard – on myriad levels. It’s hard to accept that there was something that we didn’t see, It’s hard to acknowledge that we were parenting the child we thought we had and not the one we did have. It’s hard to own the pain caused by the gap between the two. It’s hard to re-imagine the entire paradigm of our relationship with our children. But please trust me when I tell you this, it’s worth the hard. I promise.

When your adult daughter was diagnosed with autism, she was palpably relieved. It finally allowed her a context into which everything, for the first time ever, fit. Where her life, her perceptions, her experience of everything in her world made sense. Not an excuse, but an explanation. Not a get out of jail free card, but a reason that she felt the way that she did. Not an easy out, but answers to the questions that nagged at her soul for so long.

She finally knew why some things were so damned hard.

Despite this community’s best efforts to demystify it, Autism is still a scary word. I get that. Whether we hear it for the first time when our children are three or eight or twenty-eight, it can be hard to swallow. Hard to assign to our kids – or hear them assign to themselves. It’s big. It’s overwhelming. It can be nearly impossible at first to reconcile the reality of what it means with the (mis)perceptions of what it is. It’s a lot easier to say that it’s not a big deal.

Here’s the thing – it is a big deal. A really big deal. It doesn’t change your kid. But it does, if you’ll let it, change your understanding of her.

If you let it in, it can help you to figure out how to better navigate interaction with each other. To avoid the traps that bring you to the same frustrated, angry, sad places that you’ve been visiting together for so long. The insight that comes with the diagnosis shines a light on the path, illuminating the spots that were once dark – the missed connections, the unseen cues, the misunderstood conversations. It can lead you to a treasure trove of tools that you will need to build the new paradigm. To forge a new path – together. One of mutual respect. One in which you will be able to say to one another, “This is how I see this, but I now understand that you might not perceive it the same way.”

There’s work ahead. Peeling away layers of frustration and misunderstanding is not easy nor is it quick. But what that’s worthwhile ever is? And what could be more worthwhile than understanding your child?

With this diagnosis, you’ve been handed a cartographer’s compass, his brushes and parchment. If you choose to, you can use them together to create a whole new map. To explore a world that is as unique as your child. You will draw in the pitfalls – the sometimes easily avoided roads that lead nowhere, the unwelcoming mountains, the treacherous seas. You’ll record the valleys and painstakingly draw in the winding paths up and out of them, so they’ll be easier to find the next time. You’ll color in the smooth roads and rolling meadows and miles upon miles of glorious coastline. It will be a messy, chaotic, colorful, beautiful map.

These new maps show us how to love our children not as we always assumed they should be loved, but as they’ve shown us that they need to be loved. It is a universal truth that if we are to be successful – if we are to get the best out of everyone in this human family of ours, we must learn to accommodate each other, to help one other mitigate our challenges in order to leverage our strengths. There is no better place to start than within our homes, within our hearts, and with our children.

Another universal truth is that indistinguishability from others is a destructive goal. Trying to contort ourselves into something we’re not comes at a disastrously high cost. A refusal, purposeful or not, to accommodate the ones that we love forces them to conform to us. It’s a losing game, even when they win. The prizes for success are held by too many who have walked the path before your daughter and mine — anxiety, depression, low self-esteem, addiction, suicide.

Thank God there is another way. Supporting them, loving them, accommodating their needs just as they have spent their lives accommodating the demands of a world not built for them, showing them that there is a place where they are valued exactly as they are. I am convinced that, combined, these are the antidote to a world that doesn’t yet recognize the need to bend.

Empowering one another to ask for what we need – to self-advocate, is an awesome byproduct of pride in who we are. When we are open with each other about what we need in order to be successful, when we help each other to find it, we ALL succeed. And wouldn’t you know it, when we are honest with ourselves and each other about what those needs are, we can create environments that work for everyone, pairings that complement one another, jobs that leverage talents once thought too obscure to be valuable.

It’s scary. Because to accept your kid’s needs is to be unable to deny that they’ve unwittingly been accommodating yours. To understand that your child needs accommodation to be successful is to see that you do too. That’s uncomfortable. That’s hard. But it’s worth it. I promise.

Your kid is worth it.

You are worth it.

Your relationship is worth it.

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26 thoughts on “redrawing the map”

You’ve learned and grown so much in the eight years since “the ballet slippers”. You have been taught and you teach. That is certainly doing your best and that is all anyone can do. Brooke has come so far and continues to grow in “leaps and bounds”!

Perfect timing for me as we are going today to learn about my daughter’s learning disability we just found out about. I have to admit I have been feeling really bad as if I messed up big time, like I have spent so much time seeing my son and his ASD that I somehow missed seeing what was going on with her. She has visual processing disorder and pretty severe too. The fact that this sweet smart girl got this far without anyone picking it up well it kills me to know she has for 11 years been on her own. So yes I get this in so many ways. But I’m putting my guilt behind me because it doesn’t help either of us in fact it just gets in the way. Today is a new day and today we will perhaps get some more answers and learn ways to help lead my daughter in her direction which is not always the one I would have thought before to have tried to walk in. Thanks for your words Jess.

“The ballet slippers” left me sobbing – because I remembered several instances so very similar. My daughter is now 20 – and still so wonderful and loving – and she’s forgiven me for those times when “I just didn’t understand.”

Reblogged this on Opposite Ends of the Spectrum and commented:
We are constantly redrawing our map as there are new places to see and new pitfalls to avoid. Why redraw the map constantly? Think of it this way…if you were to embark on a new journey do you think it would be wiser to consult a map made by people hundreds or thousands of miles away, by looking at satellite photos years ago?…or do you think it would be more helpful to get your information from the locals…those who travel the roads every day their entire lives, who know that certain roads are impassable during a storm, or a tree has fallen in the way on another…the people who know every twist and turn because it affects them on a daily basis? Autistic people know this journey, other parents, drs, and therapists only know what they observe from the outside…and just as one guide could not possibly know an entire journey across the country, if you put enough together, each helping navigate their own piece of the journey, you can go a long way!

yeah, my adult spectrum diagnosis is something my parents refuse to discuss or acknowledge…they will ignore a lifetime of struggles with social pragmatics and sensory issues just so that they can turn a blind eye to a few words they dont’ like. I think the problem that comes up for adults is that they are firmly entrenched in social roles…not only are they daughters/sons, they are also mothers/fathers, co-workers, etc…and many people don’t really want to hear about a new diagnosis…they don’t want the person to change from the perception of them that they currently hold. so they resist it, dismiss it, belittle the idea. I think adults are basically pressured to shut up, just stay put as they are…it can be deeply painful, and really stifle a persons ability to grow mentally/emotionally. it’s hard enough to grow up with differences that lead to a lot of rejection, alienation…but when you finally reach adulthood and begin to piece together what is happening, only to receive additional rejection all because of something that is true, beneficial”…it’s a pretty terrible thing. So, I love this post, it’s an important topic…just raising it is helpful, but your responses here are spot on. Thx, Jess.

Jess, I’m glad you posted this. I have a question. How DO you discipline Brooke? Is she allowed to play the “Autism Card”? I am not on the Spectrum, but I have a physical disabity. A friend of mine who has the same disability told me one time, that she was not allowed to play the “Disability Card” when growing up. Meaning, she couldn’t blame not doing to the best of her abilities ON her disability. She was expected to abide the same rules as her able-bodied peers and siblings. Dressing, chores, etc., to the best of her ability. I guess what I’m asking, is: How do you handle the screaming and acting out? Is it accepted as a part of her Autism? I am sincerely curious. From this post, I am assuming you do hold her accountable to her actions, to a certain degree. But how? How do you discipline a child whom you’re not sure “gets it” (Actions cause re-actions)? Thank You!!!! Xxxx!!! You are SUCH A GOOD MOM!!!!!

reajade, she’s not really at a point where she would “play the autism card.” we have never presented autism as somethign that could be used as an excuse – in our house we actually take great pains to point out its positive aspects (ie her amazing memory) and not to dwell on it as the reason for the hard stuff. that’s the case in part because a lot of her hard stuff isn’t actually attributable to autism in and of itself. i’d argue that one of her biggest challenges is anxiety, which is certainly exacerbated by the communication challenges of autism, but isn’t autism. the majority of her acting out, so to speak, comes from anxiety / panic shutting down language.

so i just can’t imagine her saying “my autism made me do it,” so to speak.

as for us, well, yeah, we do take who she is into account in every decision we make about how we will react to her behavior and help her to express herself safely, effectively, and in ways that will be better received than screaming and communicating behaviorally.

you touched on the answer within your question. throughout what your friend told you was the repeated phrase, “to the best of her ability.” we expect brooke to do everything to the best of her ability, just as we do with her sister. but to that end, we acknowledge that there’s a lot that we can do to help her find and create environments that will allow her to surpass many perceived limitations. and we understand that sometimes, the very best that she can do to communicate her distress is to cry or scream or jump because she simply doesn’t have access to words. in those moments, we tend to back up and say, let’s figure out how to get you out of this so that you can find your calm and express what you need because this isn’t the way to do it.”

if we were to “discipline her” for shouting in distress, we’d be punishing her for being autistic. if we didn’t try to help her find ways to avoid the need shouting next time, we’d be letting her down as parents.

so, do we discipline her in the traditional sense? not really, no. sending her to her room or taking things away from her don’t connect with action for her the way they might for other kids, rendering those types of strategies impotent for us. but do we give her whatever she wants whenever she wants it? no. do we teach her about what’s expected and then expect it from her when she’s able? yes. do we sometimes have trouble telling the difference between unable and don’t wanna? of course. even while trying really, really hard to presume her competent and to push her forward do we sometimes fall short and lower the bar more than we should? i’d be lying if i said no.

as i’ve said before, ut can be hard to tell with our kids what is attributable to autism and what isn’t. what they can’t do and what they are otheriwse manipulating their way out of. i’m sure i dont’ always get it right. but in the end, i’d prefer to sometimes err on the side of respect than take the risk of punishing her for being who she is.

“How hard it is to face the fact that the child you assumed was just like you, who you parented as though they were just like you, wasn’t — isn’t.”

The main reason my mother rejects my diagnosis is because I *am* just like her. It’s not that she doesn’t see my struggles, she just seems to feel that because she had to deal with those all her life without any help or acknowledgement, it’s not necessary for me to get any help or acknowledgement either. She firmly believes in my ability to deal with things on my own, without a “label”.

I do love the sentence, “if we are to get the best out of everyone in this human family of ours, we must learn to accommodate each other, to help one other mitigate our challenges in order to leverage our strengths.” I agree that both parents and children need accomodation in one sense of the word or another, and in that, they are in their run together.

My heart breaks often when I see photos that remind me of my own “ballet slipper moments” — trips to Hawaii, Tahoe, Birthday Parties, Nap-times and more. Sometimes it can still make me feel physically ill. It helps to know that I’m not the only one. It helps a lot.

Our little guy’s challenges were brought to light in a way that we struggled to understand at the time. (High functioning + handsome can be a curse.) He was 6, and it was just this past October. The braveness of his Kindergarten teacher still amazes me.

WILLFULNESS vs. WIRING … this has become my mantra for myself and for those who are a part of our son’s world. For many years I thought he was just being willful and stubborn. (The apple doesn’t fall far from the tree.) But as soon as we had words and a diagnosis, our world infinitely changed for the better. Wiring I can handle. Wiring I can work with. Wiring gives me the extra patience, love and reminder to breathe deep some days.

Funnily enough, we’ve never used any of the diagnosis words with him, and that seems to be working just fine. #nolabels

Sorry to leave this here! I loved the post but, I’m actually trying to contact you regarding whether or not you do speaking engagements? I couldn’t figure out how to email you directly:/ If you could email me, I would greatly appreciate it!! Thank you so very much! Sincerely,

Thank you so much for this. My middle daughter is without a diagnosis (seeing a psychologist today, actually), but finding the “won’t stop” vs. “can’t stop” is so huge. Thank you for writing this out so clearly. I really needed to see it. There’s so much about my sweet girl I understand so much better from reading your posts. I’m so glad Brooke has you for a mom!